I’ve had a lot of people say some really nice things. They say I’m strong or doing so well under the circumstances. Those words really do mean a lot to me. I appreciate them more than I can express. However, I want to make sure not to give anyone a false sense of reality. I’m not going to start lying on here and try to act like I’m super positive and happy all the time. That’s not real. Not even close.
No matter how much I love my girls, live in the moment, try as hard as I can to fight, ‘stay positive’, everything hurts. I had no idea life could be this hard; getting out of bed is a struggle. Putting on actual clothes, brushing my teeth and leaving the house is the exception. I had no clue the world could be so dark. Blake’s diagnosis cast an enormous shadow over our lives, over our family. Of course, there is still a ton of light, but it is often hard to see. No matter what the darkness is always there. It’s everywhere. It hurts so much I can hardly bear it, every single moment of every single day. I never forget that our time with Blake is limited, very limited. I cry every day. Sometimes I cry all throughout the day.
I am always afraid. I’m afraid to watch her decline. I’m afraid I won’t know what to do for her. I’m afraid to say goodbye. I’m afraid to live without her. It feels like drowning. I’m constantly struggling to reach the surface so I can take a breath. The problem is there is no surface. I can never escape the finality of having a child with SMA type 1. I can’t forget because my heart won’t allow it. Sometimes that helps me to live in the moment; other times, I am certain there is no way I will survive this.
I find it difficult to be around healthy, happy families. It’s too hard to have passive conversations, even with those I love. Something as simple as a baby’s first birthday party makes me sad; I feel raw, horrible. The pit in my stomach opens up and I feel sick. I’m jealous, but mostly I’m angry because my baby probably won’t get to have that. Don’t even get me started on parents’ complaints about their child making a mess, finally walking and having to rearrange their living rooms because their child is getting into everything. Get real: Those are not problems! What I wouldn’t give to see Blake make a mess!
I know these are regular conversations; I’ve had them myself, tons and tons of times. I’m happy for my friends and family. I truly am. Most share their news with me with the best of intentions. I love the fact they can enjoy things like their child’s birthday; that’s a blessing. I also do my best to keep in mind I may not know what trials someone else may be facing. I realize people at the grocery store don’t understand why I’m rushing or why I’m impatient. I don’t like to leave Blake ever, really. I move as fast as I can to grab what I need as quickly as possible. People probably think I’m a rude asshole.
My world is only right now; today. And it sucks; it sucks really bad. Trying to navigate through life, even by the minute sometimes, is almost too hard to handle. I don’t want to be that someone who can’t listen to the happy stories or feels nothing but despair for milestone occasions. I just can’t do it right now; it’s too hard. Honestly, it feels impossible. This is never where I thought I would be or where my family would be. I fucking hate it.
I’m sure this is uncomfortable for some of you to read; I get that. Something pushes me to share the truth, even this horrible truth. It’s my real day to day. I feel like I would be doing my Blakey a disservice by not being honest about every aspect of this experience. She is so important and we are very, very proud of her. Sharing our life is what we will continue to do.